Human Fertilisation and Embryology Act: a retrospective ‘Public Consultation has been hijacked’

1. Human Fertilisation and Embryology Act: a retrospective ‘Public Consultation has been hijacked’ Dr Joan Haran, CESAGen 12 March 2009

2. Press Highlights • January 2006: Press reports Wilmut & Shaw plan work on human-rabbit embryos • October/November 2006: Press reports similar plans by Minger (KCL) and Armstrong (Newcastle) • January / February 2007: Reports on press briefing by Wilmut, Shaw, Minger, Armstrong & McLaren. Subsequent reports that HFEA is deferring ruling on license applications pending public consultation • September 2007: Press reports on the HFEA decision on how to approach the licensing of human-animal hybrids www.cesagen.lancs.ac.uk

3. Independent, January 10, 2007 • Headline: Should we allow the creation of embryos which are animal-human hybrids?; The big question. • Byline: Steve Connor Science Editor • ‘A public consultation into the issue of creating embryos by combining animal and human material produced a massive response against such research. This is said to have spooked the Department of Health in particular into calling for an outright ban. Critics have argued, however, that the consultation had been hijacked by pressure groups opposed to all research on human embryos.’ www.cesagen.lancs.ac.uk

4. Guardian, January 11, 2007 • Comment & Debate: Luddites and moralists: A ban on the use of hybrid embryos will be the consequence of ill conceived pressure. • Byline: Alok Jha. • ‘But when public health minister Caroline Flint unveiled the white paper on fertility research last month, the clause on animal-human hybrid embryos flew in the face of all of the scientific advice, proposing that it should not be allowed. Flint cited a preceding consultation as justification for the government's reversal of support. But the extent to which these sorts of consultations can be hijacked by pressure groups is well known.’ www.cesagen.lancs.ac.uk

5. Guardian, February 19, 2007 • Comment & Debate: The failure of rationality: Government attempts to ban hybrid embryos for stem cell research will hobble our medical future • Byline: Alok Jha • ‘You wonder sometimes if government ministers get special training to cling to the daftest ideas. The dogged attempts of Caroline Flint, the public health minister, to ban the creation of animal-human hybrid embryos for stem cell research is a case in point. Her opposition, based on a biased public consultation that was hijacked by lobby groups, presupposes that the public feels ethically dubious about it. This error would be bad enough, but her unwillingness to recognise the mistake - despite increasing isolation from scientific advisers and colleagues, and the possibility that her ban will prevent urgent medical research - is verging on the irresponsible. www.cesagen.lancs.ac.uk

6. Lancet, 18 January 2007 • Headline: Chimera research should be lightly regulated, not banned • ‘There is nothing the UK tabloid newspapers like more than a good pun. So when the Human Fertilisation and Embryology Authority (HFEA) was asked to decide whether to allow researchers to create hybrid embryos …The Sun’s editors simply could not help themselves. “Mootants” ran the headline … The Daily Star’s staff had just as much fun: “Frankenbunny: hide those carrots – British scientists are on the brink of creating a bunny monster.” With such media onslaught, the HFEA did well not to succumb to pressure from the tabloids …’ www.cesagen.lancs.ac.uk

7. Daily Star, October 6 2006 • HEADLINE: FRANKENBUNNY; Coming soon to a lab near you: • BYLINE: by OLIVIA MATTHEWS • In these tests, the scientists intend to create mainly human eggs - but with small numbers of animal genes as well. They are seeking licences from the Human Fertilisation and Embryology Authority allowing them to create embryos that are 99.9% human and 0.1% rabbit. But there is a serious side to the work. The scientists hope their "Frankenbunny" experiment may help study into neurological diseases such as Alzheimer's and Parkinson's. www.cesagen.lancs.ac.uk

8. Daily Star, October 6 2006 • HEADLINE: FRANKENBUNNY; Coming soon to a lab near you: • BYLINE: by OLIVIA MATTHEWS • Prof Stephen Minger, of King's College London, said: "Basically, we want to create tools we can use in both academic and pharmaceutical research. "We want to create disease-specific cell lines - predominantly involving neurological disorders with a known genetic basis, such as Alzheimer's and Parkinson's disease. "At the end of the day it could lead to new therapies." www.cesagen.lancs.ac.uk

9. Sun, November 7 2006 • HEADLINE: MOOTANTS • BYLINE: Emma Morton • DOCS WILL MIX HUMAN AND COW CELLS TO MAKE HYBRIDS BOFFINS want to fuse human stem cells with COW eggs -to try to find a cure for Parkinson's. The plan would allow them to create "hybrid" embryos that are 99.9 per cent human and 0.1 per cent animal. They would NOT be implanted in humans. But critics last night branded the scheme "disgusting and unethical". www.cesagen.lancs.ac.uk

10. Sun, November 7 2006 • HEADLINE: MOOTANTS • Scientists at Newcastle's Centre for Life -who cloned the first human embryo last year -have applied for a licence for the tests. They plan to replace the centres of cow eggs with human stem cells -the body's building block. They will then apply an electric charge to make them divide into an embryo, which would be "grown" in a lab dish. The boffins would harvest cells from it and analyse them before destroying the embryo in 14 days. They hope to find out how the stem cells "reprogramme" themselves to fuse with the egg. This could help find ways of using the stem cells to replace damaged brain cells in Parkinson's, Alzheimer's and stroke victims. Human eggs have to be donated by women having IVF -meaning they are scarce. www.cesagen.lancs.ac.uk

11. Independent, September 6, 2007 • Headline: The argument for hybrids; • ‘When the HFEA decided earlier this year to delay a decision on two licence applications until it had undertaken a full public consultation, the scientific community launched a major public-relations assault. Quite rightly, it wanted to make sure the public knew exactly what was at stake if British scientists were denied the opportunity of creating such embryos - which is the case in some other countries.’ www.cesagen.lancs.ac.uk

12. Mirror, September 6, 2007 • Headline: Hybrids: The Controversy • Byline: By Mike Swain, Science Editor • Q WHAT is the law on the creation of hybrid embryos? • A The Government initially wanted a complete ban on their creation. But a backlash from scientists led to a new Bill which proposed to allow some hybrid embryos. • The Human Fertilisation and Embryo Authority (HFEA) carried out its own review ahead of Parliament legislation so as not to hold back research. www.cesagen.lancs.ac.uk

13. Independent, September 6, 2007 • Headline: The argument for hybrids; • Yesterday's announcement by the Human Fertilisation and Embryology Authority that it would allow "in principle" the creation and cloning of animal-human embryos is to be welcomed. This long-awaited decision is not the final green light for scientists - that will come perhaps in November when the first licence applications are expected to be approved - but it marks a milestone in the long ethical and legal debate over such research. www.cesagen.lancs.ac.uk

14. Conclusions / Further Questions • Is public consultation only used to elicit new opportunities to persuade? • Is it only ‘the public’ which must bracket out its interests in debate over regulation and legislation? • If a member of the public is unpersuaded of the necessity of this particular form of research, must they automatically be a luddite, a moralist or a member of a pressure group? www.cesagen.lancs.ac.uk

16. Timeline 1 • 10 January 2007 – 28 March 2007: HoC Science & Technology Select Committee Inquiry into Government proposals for the regulation of hybrid and chimera embryos • 27 February 2007: Governnment’s chief scientist backs experiments on hybrid embryos • 28 February 2007: Caroline Flint, Health Minister indicates ‘cybrids’ will likely be permitted • 05 April 2007: Letter in support of hybrid research to Tony Blair by coalition of 223 medical charities • 26 April 2007 – 20 July 2007: HFEA Consultation on hybrid embryos • 17 May 2007: Draft Human Tissues & Embryos Bill published • 24 May 2007: Joint Committee appointed to scrutinise draft bill www.cesagen.lancs.ac.uk

17. Timeline 2 • 25 July 2007: Joint Committee reports to Parliament • 01 August 2007: Joint Committee report on Human Tissues and Embryos draft bill published • 05 September 2007: HFEA statement on its decision regarding hybrid embryos • 08 October 2007: Government response to Scrutiny Committee report published www.cesagen.lancs.ac.uk

18. Press Highlights • January 2006: Press reports Wilmut & Shaw plan work on human-rabbit embryos • October/November 2006: Press reports similar plans by Minger (KCL) and Armstrong (Newcastle) • January 2007: Reports on press briefing by Wilmut, Shaw, Minger, Armstrong & McLaren. Subsequent reports that HFEA is deferring ruling on license applications pending public consultation • September 2007: Press reports on the HFEA decision on how to approach the licensing of human-animal hybrids www.cesagen.lancs.ac.uk